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Getting a baby with an uncurable disease

Medium chain acyl-CoA dehydrogenase deficiency

Jan. 29, 2019 -

Just days after our son was born, we ran into trouble when our little man didn't want to eat anymore. Repeated attempts to feed him failed as he appeared to be too tired to drink from his mother. When we measured his body temperature we were shocked, only 33º Celsius! What followed was nothing less than an incredible emotional rollercoaster!

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At least he got a cool Garfield adhesive band aid
At least he got a cool Garfield adhesive band aid
Saving the life of our son - note the heart rate monitor being unable to detect heart activity (the green question mark)...
Saving the life of our son - note the heart rate monitor being unable to detect heart activity (the green question mark)...
It felt like victory to see him drinking again!
It felt like victory to see him drinking again!
VU Amsterdam emergency room
VU Amsterdam emergency room

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